Independence and Empowerment
Transitioning and Managing Your Healthcare
Maggie Bobrowitz, RN, MBA
April 28, 2018
Today’s Objectives
• Understand the necessity of transitioning to an adult
care setting
• Demonstrate how adolescents can establish care
with adult providers with minimal interruption of
care
• Barriers to transition
• Understanding your role
Transition vs Transfer
• Transfer
– Responsibility of care changes from one provider to
another (PCP and/or specialist)
– Occurs for various reasons
– No structure other than handing off records
• Transition
– Process focused
– Purposeful & deliberate action
– Involves health care team, parent, and youth working together
– Preserves the Medical Home concept
Goal of Transition
Maximize lifelong functioning and potential through
the provision of high-quality, developmentally
appropriate health care services, that continue
uninterrupted as the individual moves from
adolescence to adulthood
Why Transition at All??
Adult problems require adult doctors for
surgical & medical management
– Heart, lungs, kidney conditions, hormonal
dysfunction, etc.
– Mental illness
– Behavior challenges
Adolescence A Time of Change
• Physical growth and pubertal changes
• Development of personal identity
• Autonomy and independence
• Relationships and social activities
• Changes in school/employment
• Chronic illness/special needs superimposed on typical adolescence makes transition to adulthood even harder
Why Transition over Transfer?• Care delivery changes may cause anxiety and disrupt care
• Pediatric and Adult approaches to care differ
– Pediatric
• Family-centered
• Developmentally appropriate
• Warm & fuzzy feel
– Adult
• Individual/patient focused
• Patient assumes responsibility
• Patient privacy laws prevent engaging family w/o
documentation
– STM
– Slow processing speed
Barriers to Transition
• Adolescent
• Family/parents
• Pediatricians/specialists
• Adult PCP or specialists
• Hospitals
• Insurance industry/health
care policies
Barriers to TransitionAdolescent
– Adolescent doesn’t want to take control
• Not used to making decisions or taking initiative
• Dealing with other challenges of puberty
– Cognitive delays prevent ability
– Fearful of leaving security of pediatric team
Barriers to TransitionFamily/Parents/Guardians
– Hesitant to leave established pediatric team
– Family concerns about the adult environment
• More rigid approach
• Will physicians work together for continuity of care?
• Distance between offices
• Worried about insurance network
– Loss of control
Barriers to TransitionPhysicians
– Pediatric clinicians
• Hesitancy to let go
– Relationship established early on
– Time & effort understanding nuances & idiosyncrasies of patient
– They are the experts in childhood condition
• Change strategy in managing adolescent
– Direct conversation away from parents
– Include patient in treatment plan
– Hold them accountable and participate in visit
– Promotes independence of adolescent
Barriers to TransitionPhysicians
– Adult clinicians
• Unfamiliar with childhood condition
• Unfamiliar with intellectually or developmentally challenged
patients
• Will they receive support from pediatric specialist?
• Not willing to take patient with chronic childhood disorder
Barriers to TransitionHospitals
• Concept of implementing hospital-wide policy is daunting
– Must include clinical navigation, education, outreach, & research
– Lack of resources
• Coordinators to establish policy & guidelines, develop educational
tools & outreach programs, & provide oversight & support to all
departments
• Will funding source “run out”
– Transition managed the same among all specialists?
• Age
• Cognitive function
• Other special needs
Barriers to TransitionInsurance Industry
• Insurance networks may differ between adult physicians
• Hospital comprised of private practice & hospital employed
physicians
• Networks can change annually
• Some physicians will not see OON patients
Barriers to Transition
• Controllable
– Adolescent’s & parent’s willingness &
determination to transition
– Taking necessary steps Early
• Influential
– State/National health care policies
– Hospital transition policy
– Physician’s contribution/support
Benefits of a Smooth Transition
Parent’s anxieties are lessened
Youth autonomy increased & apprehension is decreased
Pediatric clinician comfortable handing over care
Adult clinician better able to meet the continuing
needs of the young adult
How Do We Begin?
• Identify the goal of transition for your family
– Degree of potential long-term independence
• Cognition, intellect, behavioral, physical limitations
• POA, guardianship documentation
• Recognize the barriers to navigate through
– Controllable, influential, out of your hands
• Start the conversation early
– Decreases anxiety
– Time allows for more choices
– Choices gives you power
• Understand the steps of transition
Core Elements of Health Care Transition
(AAP & AAFP 2011)
• Preparation
– Is the adolescent ready to move on?
– Are you ready?
• Assess your own perception of transitioning
• Recognize this change is emotional for everyone
• Adolescent will inherently pick up on your reluctance
• Planning stage
– Where & when do you start?
– Who can help you?
Transition Preparation
• Observe & track readiness (adolescent and parent)
– Knowledge related to medical condition and treatment
plan
– Ability to provide self care
– Emotional readiness to change doctors
– Can the parent relinquish control?
– Use spreadsheet, bulleting board, etc. to track readiness
• Obtain necessary education
– Health condition
– Treatment
– Life changes
– Management of risks
Transition Preparation
• Involve adolescent in decision making and taking
responsibility
– Prescriptions
– Missed medications
– Appointments
– Maintaining medical records/health summary
• Ask pediatric doctors to direct conversations to
adolescent
• Empower adolescent to take charge at every
opportunity
Transition Planning
• Start process at 12 years of age
• Take baby steps
• Address health care needs/gaps
• Research potential adult provider and pending
transfer date
• Seek out “get acquainted’ materials
• Arrange pre-transfer visit = reduces anxiety
Addressing Intellectually Challenged
Adolescents
• Address feelings of grief
• Recognize that parental/guardian involvement will continue
• Educate yourself
– Legal/guardianship issues
– Long-term care planning
– Community resources
• State appointed agencies
• Churches
• Schools
• Hospital programs
• Non-profit organizations
Transition Planning
Create & Maintain a Health History
Medical Summary
Emergency Care Plan
Phone Apps or Documents
• Problem list
• Medications
• Specialists
• Allergies
• Surgeries/procedures
• Diagnostics (labs/MRI)
• Family health history
• Emergency contact
• Emergency treatment
plan
• Insurance
Transition Planning
• Use pediatric team as a resource
– Referrals to adult doctors
– Introductory letter
– Ask the pediatric doctors to serve as resource for adult
doctors for the 1st year after transition
– Ask local hospitals or doctor’s office for transition policy
Pilot Study
Adolescent/Family Feedback
• Early dialog between adolescent/parents/pediatric providers
– Guided parents in starting the conversation with adolescent
– Helped them take small steps & avoid feeling of being overwhelmed
– Conversation directed at patient early
• Promoted independence of adolescent
• Held them accountable and participate in visit
• Transition Tools
– Readiness questionnaires helped them navigate process with adolescent
– Medical Summary
• Care binders offered a simple organizational tool
• Phone app
Transition Overview
• Assessed readiness
• Addressed deficiencies in knowledge
• Start the conversation early
• Start planning move to adult team early
• Complete health history & ER treatment plan
Transition Complete
• Can you help the adult provider/staff to
accommodate other special needs patients in the
future?
• Give your pediatrician feed back!!!!
Take-a-Ways
• Begin with communication early
• Transform these conversations into action
• Until a systematic plan is in place we must each
assume responsibility for creating a smooth
transition process for our families